The following are true stories sent in by today's caregivers:

9/27/05

As of 12/14/04 I became guardian of my mother, now in care center ($5,000+/mo) and her rather large property/home, etc. She is out-of-pocket due to Medicare rules, fractured pelvis, etc. and WI due to her not consenting on health care POA for nursing home, protective placement, etc. It is a virtual nightmare as I am 3.5 hours from her and cannot return more than every 3-4 weeks for mileage due to rules/regs. She is financially okay, but I have own meltdown due to not working full time for obvious reasons. I have been caregiving 10+ yrs and belonged to CAPS in mid ‘90s in Peoria, which dissolved.

Problem today is that Alzheimer groups are mostly spousal and mostly local folks. There is nothing via churches, hospitals as they focus on other areas. I am basically alone here and it is very tedious and discouraging. Fortunately, Central IL Area Agency on Aging has good groups and sponsors free event tonight and tomorrow for caregivers.

Because of financial strains, I cannot join CAPS nationally but would appreciate any feedback from long-distance caregivers in similar situation. Thus far I have found no one who shares my particular circumstance. I am 55+ and my life has changed forever, as most of yours have. I would welcome any info from anyone in area.

My mom, 92, has been my whole life the past 12 years, and my devotion remains. Those who have not been there and done that simply don't know and can't empathize and I hate to "dump" on folks. Family is far away and has own life, which is fine. I'd love to hear from anyone near IL, IA or WI to share. I have no kids, etc. so really do this alone so your stories are valuable. Thank you! Look forward to hearing.

Carolyn Schuldt Hansen
oldsmobileachieve@yahoo.com

9/20/05

I found this website out of desperation and reading several books on how to cope with an ageing parent. I am the daughter-in-law and I have taken care of my mother-in-law for 4 years. My husband has cared for his mother for over 7 years.Over 7 years ago, his mother was in a serious car wreck.

My husband cared for both his father and mother during his first marriage and divorce. His father died from Alzheimer’s .I met my husband shortly after that. We eventually got married but my husband and stepson had lived with his mother. It’s been 4 years taking care of my mother-in-law. All the books I read do not have the parent living with the caregiver. We haven’t had a normal marriage due to mom’s constant care. She cannot hear or see well, wears hearing aids and diapers.

She’s 5'1 and at least 250 pounds and has diabetes. She has fallen constantly over the years. She doesn’t do anything to help herself and is constantly turning to us. If we refuse she gets angry.

I’m 37, my husband is 42, but we are made to feel like 12-year-olds. She lives to eat and with diabetes will eat a whole pie if I do not watch her, so I find myself hiding foods from her at the doctor’s advice but she’s resentful. She acts like my husband is her husband. There is no privacy, no respect .between us. We have 4 children, only 1 living with us, but mom’s Parkinson’s is getting worse and she will not even consider assisted living or anything other than our services. I am not a doctor and I feel guilty because at anytime she could fall but I am helpless. She has become more forgetful and paranoid. She just stares out the window and sleeps all the time. But the only control she still has is the reins around us.

We love mom. but I have health problems and my husband just found out he has high blood pressure. How can we get her to see we have to take care of ourselves and that after 7 years we need to turn the job over to someone that is trained in what she needs. I am scared that the stress could tear my husband and me apart or that my husband will have a heart attack he gets so upset. She was in a rehab during the summer because she fell. She was doing great: right diet and exercise; something she will not do for us.

Are we suppose to just watch her die? Her doctor has not been of any help just keeps giving her more meds. Is there anyone who understands this feeling? I am home with her all day and if we leave to go out we are made to feel guilty. I feel I have given my all, but what do you do when that’s not enough? My husband has a heart of gold and has stood by his parents and now his mom. But I love him and am scared the stress will affect him. If anyone is as lost as I am I would like to hear from you.

Lisa
mzblond1967@aol.com

8/24/05

Hello, my name is Debra and I will soon be 54 years old. I have been a caregiver for the past 5 1/2 years for four different family members, three of whom have passed on — my mother, father and great aunt. During that time, my husband was battling multiple sclerosis, but could care for himself.

It was very rewarding to be able to care for my parents and give them dignity and quality of life their last days on this earth. And if I had to do it all over again, I certainly would! My father lived with us for 4 years. after mom's passing and he was able to be in our home and passed on to glory while I was at his bedside.

But now it is a different story. I went back to work so I could receive a steady income, but the MS has progressed in my husband and he became incapacitated and I had to let my job go. Even though he seems to be stabilized and can transfer on his own to his power chair, I am burned out and frustrated that I don't get help from any of my husband's family who live close by. We have one son who lives three hours away and has a 5-year-old son to provide for; so it would be difficult for him financially to stop everything and help.

I awake every morning with anxiety about what I am going to do. What if I need care? I need to be paying into my Social Security for my future. I make all the decisions and handle everything, as my husband cannot. I had to refinance our home to get a substantial amount of cash to hold us over until I can figure what to do. The only income we have is my husband's social security.

This is a problem that too many people face in our society. He doesn't need skilled nursing and I don't want to place him on MediCal. I placed my dad on MediCal and the state came after me for the medical bills, as he was on the title with us on our home. The board and care homes are very costly, at least in our area; they charge from $2,200 to $3,000 per month. I know there is an answer to this problem, but it won't come from our government. It will have to come from a higher source.

Debra
debraboen@dc.rr.com

8/15/05

Hi. My name is Leticia and I'm 37 years old. I have been married to a wonderful man for 16 years and we have a son who is almost 3 years old.

My mom was diagnosed with Alzheimer's 6 or 7 years ago. She started taking Aricept right away and it seems like it's helped her not get any worse. She'll never be back to the way she was but I'm thankful that she still knows us and is still "there" mentally.

She and my dad lived together in Santa Rosa and my husband, son and I lived in our home in Santa Rosa. My dad was my mom's main caregiver. He had to help with dinner, cleaning, laundry, bills and errands as she was no longer allowed to drive.

My dad used to be a heavy drinker but I finally managed to get through to him and get him to stop (for mom). I know, I know, he should stop for himself but I used guilt and anything else I could think of to get him to stop. He did.

In August of 2004 my dad had a stroke. My Husband and I realized that now they both needed us and couldn't live alone. At the time, dad couldn't drive so when he got home from the hospital, I would go over to their house in the morning before work and after work to do the cleaning, cooking, laundry, bills, etc. Eventually, I quit my two part-time jobs because it was all too much. My house and family were suffering because I spent so much time at my parents. So, my husband and I decided that maybe we should move into a bigger house and have my parents live with us. We had to move out of the county so we could afford a four-bedroom home. We got lucky and found a place that not only could we afford but we just love it and love the new area we live in.

We all moved in together in October of 2004. In the beginning it was great. Sure, I still had a lot of people to care for and a lot on my plate but I was managing. Things started getting worse in January. My dad started drinking again...a lot! I tried everything to get him to stop and he says that "I'm 65 and not going to change". I even told him that there was NO WAY we would have ever invited them to move in with us if he was drinking. Well, we invited when he wasn't drinking and now he's here and drinking. It's not like I could (or would want to) ask him to move out but sometimes I get so mad that I wish he just would. I think he figures that he can drink and doesn't need to worry about mom anymore because I do everything around here for her and everyone else.

My mom and I have always been close and it's hard for me to see her in a different light. She told me the other day that she hates that her daughter has to do so much for them. She also hates my dad's drinking but doesn't know what to do about it. My dad has even looked into assisted-living arrangements for seniors. My mom said she would never do that. Why would he think we would move over 300 miles away from our families just so they could move into that kind of place? I just don't get it.

I do so much for everyone and I keep reading articles on how you have to take time for yourself, go for a drive, do this and do that. I wonder if it's really possible. If I ever try to do something alone, my son cries because he wants to go or my mom looks lonely so I end up taking them both. Time for me? Ha! I don't know what that's like anymore. Thought about getting a part-time job but can't afford to leave my son in day care and WILL NOT leave him with my parents. If dad wasn't drinking, I would but...

The other day I was so stressed that I just wanted to run away and not come back. I have never felt that way before and it was kind of scary. My husband has been the best thing in my life. He works 10 hours a day/6 days a week. I try really hard not to vent to him because I don't want to stress him out. I end up talking to him more than I had planned and he is so understanding and caring. I think he feels like he wants to do something to help but doesn't know what to do.

My dad has gotten to the point of expecting me to do things for them. He can walk now and drives in town. He used to do the laundry and no longer does. He gives me a few bucks at the end of each month and just expects that I'll continue to do everything for them! Right now, their laundry is in the machine. I will end up folding it and mom will put it away.

I started this letter with the intention of talking about mom and I realize that I wrote mostly of dad. I feel like my head is spinning. The only reason I have time to write this now is because my grandma (mom's mom) is here visiting for a month and is with mom right now. My son is playing outside. He's already been in my den three times since I started this.

I'm really feeling like I'm at the end of my rope. I love doing things for mom because she appreciates it and she needs the help. I just wish I had more "me" time. I have a brother but he lives over 300 miles away and just started a new job. He also is separated from his wife and lives with friends so it's not like he can take my parents for a month. I wish I had a clone! Actually, about four clones would be great.

Anyway, I've rambled on and on enough. I hope this letter isn't too long that no one will read it. Maybe it will just help me to get this off my chest - I don't know.

Thanks for listening!

Leticia
brockntish@aol.com

7/30/05

I took care of my parents during their final years. I'm not sure who benefited the most, but we grew so close that Mom and I could practically read each other’s thoughts. It wasn't unusual to hear a conversation something like this: Mom--Are you thinking what I'm thinking? Me-- Yes. I think it's a great idea. Mom--Do you think he'd go for it? (referring to my father) Me--I think so. Should we tell him?

This went on especially at Christmas time. Mom and I enjoyed shopping, sometimes just window shopping, or a movie, even the state fair, but we got out and that was what was important.

Dad benefited because he preferred staying home, going to his computer. Mom and I got out, with each other's company and Dad didn't have to worry about an emergency that way. I benefited because I was going through a very hard time in my life and had their support.

After her heart attack, Mom's memory was much worse, so I learned that I had to decide if something was worth arguing about. If it was just a minor thing - like a line in a show, or who did what, Mom was right. Even if she was wrong, it wasn't that important. But if it was something like taking medication, that was worth the static that was generated. We worked out a system so I'd set the pills up at the beginning of the week, then it would be easy to see if they ad been taken. She would remind me to take my pills too, so it worked for all of us. With her diabetes, I went to the doctor with her and helped listening, as well as reporting things that were relevant.

Dad was devastated when Mom passed away. I think that he had planned on going first. He lived about a year and a half longer before he joined Mom. Dad had emphysema, heart problems and a dozen other things wrong, and towards the end he couldn't walk very far.

We had learned to improvise, because Mom had a tendency to fall down towards the end. Luckily she never got hurt. We used one of the kneelers that can be purchased in a garden store - the type that can be inverted and used as a short seat. This gave her something to push herself up while I lifted. Another improvisation was when Dad couldn't call out if he needed help. I had one of those alarms to be carried in a purse that had an alarm if one was attacked on the street. Very loud! Dad had this with him, so even if I was behind a closed door at the other end of the house, I heard him. One short beep would mean help, but whenever it's convenient; if it was continuous it was an emergency.

I am still in the house they bought when my brothers were born and Mom and Dad are still here. I can feel their presence now and then. Mom wouldn't let a little thing like death stop her from visiting. The other day Mom was putting me on the guilt trip that she used when I was a teenager! (I guess our babies never grow up, because that's about the way I think of mine too - kids in need of supervision.) The best way we handled any situations that came up was humor. Learning to turn a situation that may otherwise bring one to tears into humor carried us through many trials.

One time Mom had fallen, she was in the hospital for a hip replacement. She wanted to see the staples that were now on her side, but couldn't quite see it. So I brought my camera in and she stood in the bathroom while I shot her hip. Of course, that was the time a nurse had to choose to come in.

Another time I look back on is when Mom had a case of pneumonia; there wasn't room at the hospital, so she had to go to a different one further away. Then Dad landed in one - this time it was nearby. And I had an uncle from out of town that was at the V.A. hospital. So my day usually consisted of getting to the hospital visiting and having lunch with Dad, catching a bus (I can't drive) to the hospital downtown to visit and have dinner with Mom. Then on to the V.A. to visit with my uncle until visiting hours were over.

I wish that there was an organization like the one in the U.K. It's called Age Concern. Since so much of their population has two working adults, (when the parents get older a “granny-flat” is added to the house of one of the children). It's a completely independent apartment - private entry and all, but an internal door to the house. Age Concern helps older adults that are left alone most of the time. A bus that is equipped to handle wheelchairs and people that cannot take the big steps comes around on certain days to take them to the building where they have their tea and scones and they socialize in the morning, then it's bingo in the afternoon. The prizes aren't valuable - things like a can of peas - but it's a thrill to win something. There is a nurse there if someone needs help taking a bath - the tub has a lift if it's needed - and she does a few other things too, like checking blood pressure or sometimes just an ear if there are any questions. (Can anyone tell we lived there for a few years? I loved it!) Enough of the epistle.

Sharon
grovinsharon@earthlink.net

7/11/05

Hello, my name is MJ and I am 36 years old. My mother, who is 62, has Alzheimer's. She has been diagnosed for three years now. My father died of a heart attack when I was 21. Needless to say, it is very difficult to find myself so young with a 12-year-old son to raise and now become the primary caretaker of my mother. At this time in ones life, I do not enjoy the advantages of having parents as my mother is no longer capable of providing anything for me. I am now acting as the parent and her the child. I only have the memories of her love and care in my life and am grateful for all she gave.

I never thought I would be in this position. The hardest part is that I will one day soon be alone in this world with no parents. My son, who never knew his grandfather, will grow up without a grandmother too and all the special things grandparents do for grandchildren. I feel a tremendous loss knowing that I am unable to go to my mother for friendship, advice, support and love. I find it extremely difficult to cope at this point often vacillating from anger, extreme sadness and hopelessness. Although I struggle with my emotions I do feel guilty for wanting a so called "normal" adult life and all that that brings.

Thank you for providing a place I can speak freely without condemnation.

MJ Barrio
marsbarrio@msn.com

7/1/05

My mother passed away four years ago very quickly from non-Hodgkins lymphoma. After that my father continued to live alone in my parent’s home and was completely independent.

Well, last August he had a stroke that left him with some short-term memory loss and weakness on his left side. After rehab my brother and I decided that it was best if he moved into an assisted living facility as my house is small and I have thre children, work full time, and am practically never home. My brother, on the other hand, has a nice home, no children, but flat out said that he didn't want dad living with him. (They have never gotten along)

I am extremely happy with the facility in which dad is living, but my problem is now that he has become very demanding and calls me repeatedly throughout the day with questions on trivial matters. If I don't answer the phone or call him back right away, he keeps calling. I have had to put my cell phone ringer on silent because he keeps calling me at work. He also expects me to do everything for him such as make all his appointments, accompany him to all doctor's visit (even though the home he's in provides a driving service), come have dinner with him, do his shopping (again, the home provides the driving) etc. I realize that he misses his freedom, but he makes no effort to get involved in the activities offered at his facility, but then will complain about being bored. He refuses to come to any of his grandchildren's activities (football games, track meets, plays, high school graduation, etc.), but then complains because he never sees anybody. My family took him to dinner last week for Father's Day, but he just sat there staring into space and hardly said a word to any of us. It was not enjoyable at all. He refuses to make an effort, but still expects me to jump when he needs something.

I cannot do everything asked of me. I have taken so much time off from work to do things for him that I have already used up my vacation time for this calendar year. My brother will stop by and see dad and go to dinner every so often, but does little else.

The other day I had only gotten three hours of sleep and was extremely tired the next day. Dad called me at work and asked me to take him to dinner that night. I told him that I was very tired and just wanted to go home and sleep. He was agreeable, but kept saying "Well, if you happen to feel better, come by and pick me up." Then he called later on in the day to see if I was still tired because he really wanted to go to dinner. I almost said okay out of guilt, but I held my ground and told him "no". He has become so selfish and so unconcerned with my needs.

I am now trying to stand up for myself and not do everything he demands. As long as I know that he's not being hurt in any way, then I just have to refuse sometimes (like taking him to dinner). It's so hard, I go from being angry to guilty and it's really becoming a strain on me. Thanks for letting me post my story.

Mary
pawzdog@hotmail.com

7/7/05

Well, I am really starting to feel like I am not doing anything right.

My Mom died the first of this year, she was only 55 and went into diabetic shock and had a massive heart attack. My Dad and I were with her. It was very unexpected. Since then I have kind of been the anchor for everyone. I had no time for grief because I was tending to everyone else.

I work with my Dad in a "family" business. That makes things doubly hard. He is getting older and his health is not great. The demands put upon me at work, at home and by my Dad are huge. I am having a really hard time handling it all. It's hard to talk about. I have so many fears and today it all has crashed down on me. I really am at a loss. I want to run far and fast, but I know that the world would fall apart if I did.

If anyone has any suggestions on coping with all of the stress, I could sure use them. I do have a brother, but he doesn't work with us and I have to really guilt him into doing anything. That's a whole other story.

Thanks for listening.

Brenda
Hooterville67@yahoo.com

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